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Diseases

Genetic and Rare Diseases Information Center (GARD)

Rett syndrome


Other Names for this Disease
  • Autism, dementia, ataxia, and loss of purposeful hand use
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

Is it normal for girls with Rett syndrome to scream and cry? Can girls with Rett syndrome be potty trained? Also, is biting other children normal for girls with Rett syndrome?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Is it normal for girls with Rett syndrome to scream and cry?

Yes. It is normal for girls with Rett syndrome to cry. Most parents describe screaming fits and inconsolable crying by age 18-24 months.[1]

You can read more about this in the comprehensive review on MECP2-Related Disorders online by visiting GeneReviews at the following link. GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. 
https://www.ncbi.nlm.nih.gov/books/NBK1497/ 
Last updated: 4/26/2016

Can girls with Rett syndrome be potty trained?

Yes, girls with Rett syndrome can and have been successfully potty trained. Rettsyndrome.org (formerly the International Rett Syndrome Foundation) provides tips on potty training in their Rett Syndrome Handbook. Contact for Rettsyndrome.org is also provided below.

International Rett Syndrome Foundation
4600 Devitt Drive
Cincinnati OH 45246
Toll-free: 1-800-818-7388
Phone: 513-874-3020
Fax 513-874-2520
E-mail: admin@rettsyndrome.org 
Web site: http://www.rettsyndrome.org/  
Last updated: 4/26/2016

Is biting other children normal for girls with Rett syndrome?

Girls with Rett syndrome, like other children, often go through a phase of biting, hitting, or spitting because it gets attention. While typically this is a behavior seen in toddlers, girls with Rett syndrome may continue the behavior for much longer. This is likely because as typical toddlers develop language, they learn to find more effective ways of getting attention and having their needs met. Girls with Rett syndrome do not develop those language skills and can take quite a long time to learn acceptable ways of responding.

You can read this and more about the challenging behaviors seen in Rett syndrome through the Rett Syndrome Handbook.
Last updated: 4/26/2016

References
Other Names for this Disease
  • Autism, dementia, ataxia, and loss of purposeful hand use
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.